Monday, February 18, 2013

Hardship

Another party, another birthday party, I find them so hard. Or maybe it is because I am tired. Tired of having to constantly include Zoé. She never mingles with other kids, she is always alone in a different room, the party is outside, she stays inside, the party is downstairs, she's upstairs. Then, we have some accident to deal with, pee or poop ( it is still a battle, but it is MUCH better than it ever was). Driving home in the dark, Zoe in the backseat, listening to her music, I cried. I cried for her differences, for her challenges, for her inability to make friends when in a different setting, for her aloofness, for her hurdles, for her journey, and ours.
Some days are like that.
Especially at birthday parties, where everyone seems "perfect", kids are joyful, and mine is spirited away.
I cried and internally screamed: " why is she not like other kids? Why is it a constant battle?" I really feel hopeless.
And then when I feel like that, I think of my father, and how I miss him, and how effing (to quote Paul Auster) hard life can be.
Sorry for being so negative, but remember, the blog is the outlet, the one space I cherish, for I am able to let everything ooze out, the good and the bad, the joys of having a very special, loving child and the hardships and terrifying journey ahead.

On a happier note, a wonderful email uplifted my spirits. Bianca, the mother of one of Zoé's old classmates at Les Petits Francophones discovered the blog and sent me her comment. She agreed for me to share it. So here it goes:


"Salut Sarah,
This is Lucia's mom, Bianca writing.  I know we haven't spoken much, but I was doing my taxes this morning and so did a search for LPF to get the info I needed -- your blog came up in the top search results. I hope you don't find this too intrusive, since I wasn't invited to read your blog, but I was hooked from the first entry.  You have a real gift with words.  And a strength, love, and dedication towards your child that I find so amazing.  To be honest with you, I never even knew Zoe has special  needs.  I always thought she was so cute and charmante, with her red glasses, and reserved disposition.  I just thought she was shy.  And Lulu loves Zoe and never thought of her as "disabled" in any way.  In fact, when I was reading your blog, she was looking over my shoulder and just kept wanting to see the pictures of Zoe and commenting on how cute she was.  What I hope I'm conveying is that you, your family, and support system have done a great job in assimilating her with children who don't have the obstacles you all have to deal with.  We all like to think raising children is very difficult yet rewarding. I have an almost 5 year old and an almost 18 year old so I know the full spectrum. But you and your family have to do so much more.  You and your family humble us. And Zoe is such a beautiful result of all your love, patience, and hard work."
Bianca Cano Nakamura
          
THANK YOU, Bianca, you don't know how much these words mean to me!

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